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Whose Dying Is It Anyway?

Dr. Monica Williams-Murphy is a Board Certified Emergency Medicine Physician, who practices in one of the largest emergency departments in the United States at Huntsville Hospital. Through her writing and speaking, she is devoted to transforming the end of life into a time of peace, closure and healing. Media Page

Many times a patient arrives to the Emergency Department and it becomes very clear that he or she is beginning to die. What is not always so clear is whose needs we are trying to meet, the one who is dying or one of the family member’s.

***

“Dr. Murphy,” my nurse called out, “This man who just arrived from dialysis doesn’t look so well, would you please come to room 35?”

“Sure,” I always knew that Nancy had good judgment and when she was worried about a patient, this meant that I needed to be worried as well.

Entering room 35, I tilted my head to be aligned with my patient’s. Mr. Joe Brock was a 79-year-old man who had just been sent to the ER from a dialysis clinic. His 3 hour long dialysis session had been cut short because his blood pressure had dropped and he began to act rather lethargic. As I looked into his face which was resting at an angle on his collar bone, he shifted his eyes to look into mine, but that’s all that he did. Mr. Brock didn’t have anything to say. When I asked him his name or where he was, he just looked at me. When I asked him to squeeze my hand or wiggle his toes, he simply stopped looking at me.

Other than shifting his gaze, the only real physical movement he had was occurring in his chest. He was breathing very rapidly and his chest rose and fell like a pumping piston. I could hear the sounds of fluid bubbling up in his lungs just standing at his bedside. This sound may be caused by pneumonia or in the case of dialysis patients, extra body water building up in the lungs.

“Nancy, can you call his family or the dialysis clinic and see what he is like normally?” I asked trying to figure out where Mr. Brock was overall in the picture of life.

Digging through the papers sent from the dialysis clinic, she produced an official DNR form which she gave to me and a phone number of his legal guardian, his niece. She left the room to call while I reviewed the DNR document. “Looks official” I said to myself, as I noted Mr. Brock’s own signature and that of his physician, with an additional witness at the bottom. I quickly ordered labs, IVs, medications, and a specialized external breathing mask that would help push air into his lungs to ease his work of breathing. (DNR documents alone do not limit medical care other than breathing tubes in the lungs and shocks/chest compressions.)

“His niece is in the waiting room already, so I told them to send her back,” Nancy announced returning to the room.

The niece arrived and after a short introduction, I explained, “Mr. Brock is very sick today; he has fluid in his lungs, and he seems very weak to me.” She nodded in agreement as I showed her first-hand how he was unable to move his hands or feet.

“This is not like him,” she announced with a concerned expression. “Uncle Joe is normally talkative and moves his arms and legs pretty well for someone who is wheelchair bound.”

This was just the information that I was looking for. I was trying to ascertain his most recent quality of life.

We both moved aside as the respiratory therapist entered the room with the positive pressure airway device. I explained what we were doing for the benefit of the niece, “He needs some extra force to push air into his lungs right now. I think this machine should be fine for that and according to his paper work, his DNR, he would not want more than this anyway.”

“What do you mean?” She asked, now eyeing me warily.

“By signing that form he indicated that he would not want to be on a breathing machine that enters the lungs for any reason.”

“No, I would want you to do that if he needed it.” She responded.

“Well, these are his written wishes and that’s what I would hope that we should try to honor,” I responded, as usual, slightly put off when a surrogate medical decision maker wants to override the advance directives of the patient.

Hoping to take a different route in encouraging her to honor his plans, I asked, “What do you think he would want for himself?”

She responded, “Uncle Joe doesn’t know what he wants for himself. He always asks me how he is doing and I tell him that he is doing just fine.”

“So, what is it that you want for him?” I queried in a firm voice, seeing that she would not be viewing the situation from the perspective of his best interest, but rather her own interest and whatever forces belied that position.

“I’m 59 years-old and he needs to stay around at least until I’m 60.” She replied very matter-of-factly.

“But this is not about us, it is about him, his comfort, his dignity…” I began to explain, trying my best to veil a sense of growing anger about such selfish intentions.

Holding up her hand, she cut me off, “You just go ahead and give him what he needs to keep him here. He has gotten sicker than this and pulled through before. Doctors have tried to talk me out of other treatments but I have my attorney’s office number on speed dial. You know what I’m saying?” She then placed her hand on my folded arms and smiled coolly.

“Excuse me?” I felt my eyes narrow, almost becoming slit-like and my legs began to quiver with adrenalin.

Just then the secretary paged me, “Dr. Murphy, you have a phone call at the desk.”

I left the room shaking my head partially in anger and partially to re-orient myself, to make sure that I heard all of that correctly.

I gripped the phone and answered gruffly, “Emergency Department, this is Doctor Murphy.”

It was the physician-assistant from the dialysis clinic. “Hi, Doctor Murphy, this is Ron the PA (Physician Assistant) with the Kidney Specialists. How is Mr. Brock doing?”

“Boy am I glad to talk to you,” I replied. “Mr. Brock is in pretty bad shape. He is in respiratory distress, possibly leading to respiratory failure and his niece, the power-of-attorney, wants to reverse his DNR and make him a full-code!” my voice was growing louder, despite my attempted self-control. I noticed all of the nurses near the desk now staring at me. Nurses are accustomed to hearing doctors grumble in general, but they were staring because this is not my usual disposition.

“Do you have any ideas?” I continued. “This type of conversation is normally my specialty, I’ve written a book on it for heavens-sake, but I’m not sure at this point that Mr. Brock’s niece and I will be able to get on the same page.”

Smart doctors know when they are in over their heads and call in support. When it comes to end-of-life dilemmas, this may be hospice consultants, ethics boards or simply and sometimes most effectively, the healthcare provider who knows the family best. Today this was Ron.

“This has happened before. I’ll be right over,” he replied.

“Thank you!” I said even more loudly than before.

When I hung up the phone, the secretary asked, “May I get you a cup of water or something Doctor Murphy?”…

Within minutes, Ron was at my side carrying a stack of paper which turned out to be Mr. Brocks chart from the dialysis center and a history of his hospital admissions. “She has alternated his code status a lot. It seems that when he is stable and not ill, she is comfortable with keeping his DNR orders active, but when he becomes ill, she panics and changes her mind.”

I was slightly relieved to find out that this was the case. Maybe I was not a miserable failure in discussing end-of-life care in this instance, but unbeknownst to me I had simply entered the stage of an ongoing drama.

While Ron was in the room with Mr. Brock and his niece, the respiratory therapist brought me the results of a special test I had ordered showing decreasing oxygen and increasing carbon dioxide levels in his blood. We looked at each other knowingly. The positive pressure mask was not as effective as we had hoped it would be, and his respiratory status was growing worse. Unless Ron could convince the niece to honor Mr. Brocks wishes, I would be obligated to put a breathing tube in his throat and place him on a ventilator—exactly what he had decided that he didn’t want for himself when he personally signed his Do Not Resuscitate orders.

Soon Ron came out of the room smiling, a very different expression than the one I had when leaving earlier. “She agreed to keep his status as DNR” he said with relief.

“How did you get her to agree to that? ” I asked wanting to know his secret.

“Sometimes it just takes someone you know to put their arm around you and to remind you of the bigger picture.” His words rang loudly with great truth.

“This is why the primary care providers and specialists who care for these people must be having these types of conversations more frequently, ” I said. ” I am nothing more than a stranger to my patients. They want and need to be having these conversations with the health care providers who know them best.” I said aloud but wondered silently to myself how emergency doctors had become the defacto experts on end of life decision making. It’s hard for strangers to talk about the intricacies of life and death. It’s never easy, but it’s certainly easier among friends, those with relationships built on time and trust; like Ron that day.

I thanked Ron and went back in to check on Mr. Brock. He was now nearly unresponsive, slipping further into the deep sleep that overtakes when breathing shallows and death nears. This time his niece made no mention of attorneys, or tubes, she simply asked that they be admitted to a quieter room. A purple DNR bracelet was slipped onto his wrist. She touched the letters and then stroked his hand. Bending forward she placed a kiss on his forehead, “I love you Uncle Joe, I always will.”

It is never easy to lose the ones we love, it is even harder to choose to let go.

Lessons from Mr. Brock and his niece, the power of attorney:

• When we are making end-of-life decisions for a loved one, we must try very hard to extract our personal desires from the decision making process and instead focus on the person who is dying. Attempt to make decisions that they would make for themselves. See Fierro’s Four R’s: A Tool for Surrogate Medical Decision Makers

• When we become fearful, we may express ourselves in defensive or aggressive manners. Remember, when someone is dying, decisions should not be based on our fears or regrets but should instead serve the best interest of the person for whom you and the doctor are caring.

Lessons for Doctors:

• Families often make decisions for dying relatives based on fear. Those fears may be expressed using threatening language at times of elevated stress. Attempt to explore those fears, allowing their free expression, then redirect attention, if possible, to the decision at hand and ask what the patient might choose for himself or herself. Try to have more equanimity than I did in this case. Use Fierro’s Four R’s as a guide.

• Know when you are in over your head. Ask for help from healthcare providers who know the family and patient best. Consider asking for Palliative Care or Hospice consultation. These experts are trained in techniques to defuse charged end-of-life decision making and are artful in allaying the fears that arise as death and dying is discussed and debated.

(Elements of the patient story have been altered to protect the privacy of the patient and family. Publication date has no relevance to the actual date of the patient encounter. As always, we express gratitude for the patients and families who teach us the lessons we write about.)

"It's OK to Die" is a ground-breaking book filled with graphic stories straight out of the Emergency Room illustrating how most Americans are completely unprepared for death and dying. In response, the authors have created a unique and comprehensive guide urging EVERYONE to prepare in advance, to assure their own peace and to prevent the suffering of their loved ones. Learn More..

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